“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”~A.A. Milne, from "Winnie the Pooh"

Tuesday, March 20, 2012

3/21. Otherwise known in the Down Syndrome community as World Down Syndrome Day, now an officially UN sanctioned day of worldwide awareness. The day was chosen as the perfect date since those with Down Syndrome have 3 copies of the 21st chromosome.

Now, more than ever, I find that we, the parents of these amazing, awe inspiring kids have something important to say to others facing the life or death decision about whether to continue a pregnancy when faced with a diagnosis of DS........

I asked 25 moms what they would say to a parent who is on the cusp of standing in our well travelled shoes. Here are their replies......

"I'd tell them it’s ok. It’s ok to be frustrated, to be mad, to be angry, and to feel sad. But I can assure that as soon as that little one comes out everything just disappears!!! They keep on saying special kids are send to special parents, I think those special kids make the parents special. We are not alone. There are many parents like us, new and old parents who had been through this and I really haven’t meet anyone who has complained about their life. Being a parent of a special baby makes us special as well and makes us a better person. There are a lot of resources, a lot of support and lots of people like us that have gone through this that are out there to help. And the last thing I would say is “Welcome to our Family”. That’s one thing they told me and I just can’t forget it. "~Adriana

Adriana and Eugenio

"It might be hard to imagine now, but looking back in a few years, if someone asks if you would take the DS out of your child, you won't want to. It won't always be easy, but the highs are higher. You will be amazed at the joy one little person can bring to everyone around them. No, they aren't always happy. But they are loving, and forgiving, and curious, and fun, and stubborn, and funny, and determined, and just a kiddo more like the others in your family than you can imagine. It's a baby, not a diagnosis. They need love and food and diaper changes, just like any other baby. My favorite DS quote by a fellow blogger - "We often think that having a child with T21 {Trisomy 21, aka Down syndrome} is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen." Don't freak about the what if's. Take one day at a time. Join a support group. Local or facebook, or whatever. It's so helpful to know other mom's have the same feelings about the initial diagnosis. And it's helpful to have playgroups with kiddos who have DS so you can see first hand all the things they CAN do and will do. And it's helpful to ask the 'did your kid do this?" questions that your neighbors can't relate to ;) Most of all, enjoy your baby!!"~Kristin

Kristin, Steve, Piper, and Max

"That is is going to be harder then raising a child without DS, but ten times as rewarding. That it is going to be painful, but also incredibly joyful. That they will think they can't, its too hard, its too much, but its not. That you don't have to be a superhero to raise a child with DS, you just have to love them. And oh, they are too irresistible not to love. That their baby's smile and laughter will be the sweetest thing in the whole word, and they will experience a whole lot more of that then anything bad or negative. I wish I could give comfort about the adult years, but we ourselves are not there yet so I do not truly know what it is like to have an older child with DS. I, however, do know how much love I have for my daughter and how she amazes me every day, so I can only imagine that that love will over ride any future struggle."~Shannon

Fiona

"We didn't find out until the day after our daughter was born, so it is difficult for me to know what I would have wanted to hear if we had a prenatal dx. I know what I'd tell someone who just had a baby with DS though --- Don't be afraid to love your precious baby!! Don't let worries about the future rob you of this precious time. Also, this is difficult to express, but your baby is still YOUR baby. Unless you adopted or chose a surrogate or sperm donor your baby is still made from parts of mommy and parts of daddy. She will be more like you than different."~Lisa

Lisa and Elly

"Get ready to love and to be loved more than you ever have before."~Robin

Lydia

"I would tell a new parent that it is not so scary as you think. That the love is divine, that we meet the BEST group of people in the world through our kids. People we would never have met otherwise. That yes, sometimes it is hard, sometimes it hurts when you get a look or someone says something ugly, but it is usually their problem, not ours. That our kids do all the same things as other kids, they just take some extra time. That they grow up a bit slower, so you appreciate the stages a bit more. They are a gift from God himself, so you will learn to take the extra time, and actually SEE everything. To SEE miracles happen, on a small and huge scale. You have no idea how your life will be blessed...yes, some things will be different. Some of your dreams will be different. BUT THERE WILL STILL BE DREAMS...THERE WILL STILL BE JOY UNLIKE YOU EVER THOUGHT THERE WOULD BE. This journey is not one you thought you wanted...but when it is given to you...it is so magical. Treasure it, don't fear it! Your baby will be a teacher, unlike any you ever knew. He or she will teach you who you really are. Who you always wanted to be...and had no idea! Be blessed!"~Kimberly

Kimberly and Grace

"It's OK to be scared. No one knows how or what their child will grow up to be. But kids with DS do grow up and they do the same things as their peers. I know kids that love books, swimming, riding bikes, and taking care of animals.

You don't have to have all the answers right now either. You will learn as you go, just as you would with a typically developing child. All that baby will need is love."~Stephanie

Stephanie and Owen

"They are a BABY first and they need love and cuddles just like another baby!! Paige is the best thing that has happen to us! I thought I was so alone in the beginning but soon found out that there are so many wonderful families out there with beautiful children with DS and it warms my heart that there are wonderful non-judgemental people in the world!"~Terra

Paige

"Remember he is just a baby and needs love and attention just like you do, he just happens to have an extra part, for extra love.

Love your child for who (s)he is and they can do anything any other child can do.

Also treat them like you would any other child. We discipline Rylan, he has to learn from all aspects of life even if he does not like it." ~Els

Rylan

"To love their baby. To keep dreaming and hoping for their baby...because children with Down syndrome have so many strengths. To expect some bumps but to also expect the ride of their lives. And I would tell them that the first thing I learned from Camden was that he doesn't need me, I need him. "~Tonya

Camden

"I would explain to them that while there may be times that are tough, they are easily forgotten when mixed with the pure joy Ian has brought to our family. I would share websites/books with them to provide them with information that will educate them on what it means to raise a child with DS. If they live near a Gigi's playhouse or I know of a nearby support group I would encourage them to visit and get to know other parents...because one of the beautiful things about our kids is that their paths (while similar) can be very different. I would explain to them how I went from being a Type A career person to a stay at home mom (and now more like a Type Z)...I have learned to stop and take the time to notice every little step along the way and appreciated them so much more so than when my other kids were little. I would also tell them what a wonderful hero and role-model Ian is for his siblings (even though he is the youngest)...he has to try ten times harder to do things that came very easily to them..but yet he never gives up! He even smiles while doing it. Finally, I would explain to them that the best thing they can do for themselves and their child is to embrace the child like they had always planned to...but now they also have a little "extra" to embrace. The road less taken is beautiful!"~Cathie

Lydia

" She is just a little girl who happens to have DS. She is just like any other little girl. There is nothing to be afraid of."~Kristi

Kristi and Piper

"I would say congratulations on your pregnancy! That I understand the worry that sets in when you start getting exposed to the what ifs and potential medical and financial issues of raising a child with Down syndrome. While I have no other child to compare this experience to, I would say that we love being parents to Grace, and our lives are infinitely better because she is in our lives. That God/the universe/life (whatever you are comfortable with) doesn't throw you anything more than you can handle, and that you are stronger and more prepared than you think. That this child will show you the way when you are not sure of the way yourself. I would say that you and this child were matched because you are perfect for each other, and that there is no one better to raise this child than you. And yes, there will be challenges, and heartbreak, and worry, but there will also be celebrations and joy and normalcy. Best of luck, and congratulations!"~Jenni

Jenni and Grace

"If I could speak to a parent who had a prenatal diagnosis, I would tell them that raising their baby with DS will be very much like raising their other children, or if it is their first, like raising a typical child. They will love their child fiercely, and their child will make their hearts melt. They will have that awesome baby scent, soft skin, and a warm little body you just want to hold in your arms. They will cry, smile, and later, belly laugh. They will nurse, (or drink their bottle) while they gaze into your eyes. You will fall in love, I promise! It will come so naturally to you, to do anything you can to protect and nurture and give this child the absolute best you possibly can, not because your child has DS, but because it is your precious baby!"~Diana

Kaleigh

"I would say to give yourself time to try and absorb the enormity of the diagnosis. Talk to PARENTS, not doctors--us parents are in the trenches and can share the real story of a child with DS. Try to find a doctor who is compassionate towards your child--he/she should love your child as much as you do. Remember that your child WILL walk, talk, read, write, go to school--he/she may just take a little longer to do these things. Don't worry about your child's future yet (high school, adulthood, etc)--take it one day at a time. Right now, your child is a BABY who just needs love and for you to love him/her for what they are--not what they are not or what they could have been. One thing our pediatrician told us that really sticks with us is that many families would love to have a diagnosis of "just" DS--that puts things in perspective! The last thing is that DS is the best thing I didn't know I needed!"~Jill

Yes, Lydia AGAIN. :)

" Congratulations!! Having a child with DS is an awesome experience, it can be scary at times because of different medical issues but it is very fulfilling, and you will find that DS doesn’t really matter a whole heck of a lot in the big picture and your child will make your life better." ~Toni

"Please, please don't terminate! I'm not going to lie to you and tell have a child with special needs is easy by any means but I will tell you it's worth it! My daughter even with all her "stuff"is so much more...I'll say manageable for lack of a better word, than my typical three year old haha she's such a joy and a doll. People have this preconceived notion that a healthy child is easier, better, or even preferred to a child with special needs but the truth is parenting isn't easy no matter what and no one's child is perfect, special needs or not!" ~Melissa

" I would ( and have already to pregnant moms in our local group ), give them my website and recommended reading list. Tell them there are a lot of resources for them and to investigate this themselves before they allow a medical professional to advise them that their child will amount to nothing. We are so lucky to only have DS, there are so many other families who deal with much more in regards to special needs. We won the lottery with Gage!"~Shanna

Shanna and Gage

"They CAN do it. Yes, it is scary to face the unknown, but isn't life with children unknown anyway? The moment your eyes meet your child with designer genes, their chromosome count won't matter. You will just feel love. And as far as worry - of course I worry about Ollie's future & what she will accomplish, but I have those same fears with my older children. I just hold very different fears. For example - teen pregnancy, drunk driving, addiction, divorce - those are all things you fear with raising children - I don't hold those fears for Ollie. Instead the thought of Ollie getting married & moving out from my house terrifies me. Each child is different and we raise them all the best we can. Take what God gives you with open hands & enjoy every minute because they all grow up to fast."~Annie

Annie and Ollie

"To a parent who has just been given a pre-natal diagnosis of DS I'd say that this child will change your whole world. They will change how you view the world and they will change how the world views you."~Adrienne

Adrienne and Steph

"All kids are challenging & have issues & need support– kids with DS aren’t the 'different' and 'handicapped' kids the world portrays them as. These kids are also happy with who they are – it is only us who may have a problem which is only societal – if they don’t see themselves as 'handicapped' why should we?"~Gaby

Gaby and Hallel

"We're only 9 months in. I think the biggest thing to remember is that milestones happen on a spectrum of time for all children. My first son was a late crawler and walker. So, I don't expect that Andy will be on any milestone timeline except for his own."~Katherine

"Raising a child with DS feels so much like raising a typical child. Yes, milestones may take just a bit longer to reach, but the love and pride you feel for you child is indescribable." ~Amber

" I think I'd be excited for anyone who had a prenatal diagnosis. It's great news to have a baby."~Deborah

"The first thing I would tell a parent facing the diagnosis of DS is that it is okay to grieve. Your life isn't going to be the life you planned. This is not the child you envisioned when you learned of the pregnancy. It is normal to mourn that loss, but don't lose yourself in it. Spend a healthy amount of time mourning what might have been and then realize that you have been given the most amazing gift. Your life will never be the same. It will be the most amazing journey of your life. No, it might not be as exciting as some of your friends, but if you open yourself up, you will meet the most amazing people on this journey. Don't be afraid to ask questions. Don't be afraid to say "hey, I am scared". There isn't a single one of us that haven't had those same fears or questions. We won't laugh at you. We will most likely sit down with you and cry and vent. We will tell you our stories (we all LOVE to talk about our angels) and let you know that while this is the beginning of what seems a scary journey, it is one you will never once regret taking.

I would tell them about handing my world over to a stranger so they could stop her heart. I would tell them there is no other fear greater than that. I would tell them that that fragile little 10 pound 8 month old with a broken heart is now 5 and a healthy weight, growing like a weed. I would tell them to never discount the things your child will accomplish. They will do as much or as little as expected, so expect the moon and the stars and watch them surpass even that. I would tell them that with that extra chromosome their child was given extra abilities to wow all that meet her. That I have discovered that this is an amazing club that no one knows they want to be a part of until their little one recruits them.

Lastly I would let them know that if you open yourself up to this community, you will meet some of the most amazing women. Some will become your very best friends and you will feel as though each of these children are your own. Here is your guidebook for Holland, we are thrilled to have you."~Ange

Ange and Emily

There isn't much that I personally can say that these wonderful mamas haven't already said.....

This journey may not be the one you had planned, but it is well worth the extra effort to take the road less travelled. While the path is often winding, there is breathtaking beauty at every single turn. Welcome to the family. We're so glad you're here! :)

Saturday, March 17, 2012

It has been unseasonably beautiful here in Indiana for the entire week. Liddy and I have been taking full advantage of the string of nearly 80 degree days, spending a little time outdoors each day. I'm pretty sure that she had forgotten the feel of sunshine on her face and the breeze blowing in her hair. She also notices things more now than she did the last time we were able to spend time outside.....which leads to a whole lot of new discoveries (including her shadow!).

I find myself thanking God again and again for showing me the world through this baby's eyes. Because of her, I am seeing a world that is a whole lot brighter....and a whole lot more amazing.

I needed the reminder.

Spending the extra time with her has reminded me that my baby will only be a baby for a little while longer...She is, in fact, quickly leaving behind the infant she was not so long ago and becoming more the little girl that I can expect to see a whole lot more of in the future. Every day that passes brings a little more independence and a lot more personality......Despite the fact that she sometimes seems miles behind in the major milestones of her "typical" peers, who have left behind crawling for more efficient modes of transportation while she still struggles to crawl, the little girl still steadily emerges.

It wasn't me, I swear!

The last few weeks have brought about a virtual explosion of language...and irrevocable proof that she understands everything that is going on around her.

I wasn't expecting that, although she might not be right where I would have expected her to be developmentally were it not for DS, the remaining vestiges of babyhood would quickly fade away anyway.

I needed the reminder.

As I tucked her into bed tonight, I took the extra time to play with her for a little while. Bedtime is the very best time of the day with her...not because she will soon fade into peaceful sleep, but because in those last few moments of the day, she is overflowing with laughter. As she fills my ears with the sound of her giggles, as I can't help but laugh along with her, the rest of the world fades away and time stands still, even if for only a moment. These precious minutes are fleeting...they are special.

I needed the reminder.

So tonight I sit here, in the quiet house, while my baby girl dances amid whatever it is that babies dream of, and I am beyond grateful for the changes this little girl has brought to my life. I am praising the slower pace that has allowed me a little extra time to enjoy this fleeting moment. Thankful for the path that has brought our family here, to this moment.By the grace of God....I am constantly reminded that while this may not have been the road we set out on, the beauty here is unfathomable.....

Tuesday, March 13, 2012

Life as we knew it came crashing down around us on a crisp, sunshiny September day in 2010. As we were coming to grips with what seemed to us a catastrophic heart defect in our as yet unborn daughter, a simple phone call swept the rug out from under our already unsteady feet. With five little casually spoken words, "Your baby has Down Syndrome", the remainder of my hopes and dreams for little Lydia went up in flames and the ashes of the life I had planned scattered in the wind. Or so I thought.
As we gradually adjusted to this new development, more than anything my focus was on her heart. The Down Syndrome was almost a non-issue....something I couldn't wrap my head around because worry about the heart defect and consequently, open heart surgery, consumed me. Somehow, DS doesn't seem as big of a deal when faced with the words heart failure and the thought that in a very real sense, the baby that has consumed your every waking moment for months, the pretty little girl on the ultrasound screen, the miracle you prayed for for years, was at risk of dying.
However, Down Syndrome was something that could not be completely ignored. I wish that I could say that I never had a second's doubt about how amazing little Liddy would be, but if I tried to say that I would be a liar. I worried. Constantly. Would she walk and talk? Would she ever be independent? Would I love her as much once she was placed in my arms as I did while she was tucked safe and sound in my ever growing stomach?
I truly thought I wasn't capable of being the mom of a child with "special needs". There were a thousand reasons that I believed that God had made a mistake in choosing me. I was too selfish, too impatient, too weak (and about a million more things). I prayed that someone somewhere had made a mistake. Instead of researching what it truly meant to have a child with Down Syndrome, I spent my time researching the percentage of wrong amnio test results.
Looking back, it was all ridiculous. Every single thought that went through my head, every worry that I held deep in the dark recesses of my broken heart. Most of them based on unconscious prejudices I never knew I had and outdated information handed to us which painted a very different picture than the reality.

There are a whole lot of things I wish I could tell the woman that I was before I became Liddy's mama. A whole lot of things I wish someone had told me. Almost a year of constant worry made me older, gave me a whole lot of grey hair, and made me shed bucketfuls of senseless tears.......
But that same year gave me great wisdom, changed who I am for the better, and taught me a whole lot about life.

So here it is....a short list of the things I would tell that me if I could travel back in time.

1. Don't be afraid. Let go of the fear completely. Trust that God knows what He's doing and has no intentions of harming you.
2. Your baby WILL walk and talk. She WILL do everything your other kids do, albeit on her own time schedule. You can fully expect her to live on her own (in fact, she's going to be so independent at a year old that you'll have a hard time imagining her NOT living alone someday...)

3. Even though you think you'll have a hard time adjusting to her time schedule ( due to your natural born impatience) you will actually enjoy the slower pace. It keeps your baby a baby just a little bit longer and allows you to fully enjoy each and every accomplishment fully while waiting on the next.
4. There is nothing (nothing) in this world more uplifting than her smile. That toothless grin, which spreads across her entire face, bringing out dimples and putting a twinkle in her big blue eyes, has the ability to make the worst day better, dry tears, and make all right in the world.

5. You, the person who has always shied away from rocking the boat, the one who always avoids conflict, will find yourself standing up on a variety of issues..many of which you never knew existed or never had a solid conviction about in the days before. You will advocate. You will educate. You will have no problem standing toe to toe with anyone who dares to even attempt to put your girl in a box or slap her with a label.
6. You will realize that Down Syndrome doesn't define who your daughter is. Its just a part of her...the same as big blue eyes, soft baby hair, and a bubbly personality. She isn't a syndrome. She's your child.
7. You didn't do anything to deserve this. You aren't being punished for some long forgotten sin. You were chosen. You were blessed beyond words.

8. She is just like every other child. Unique. With her own goals, her own personality, her own thoughts. She will push you to the very brink of sanity (just like your other kids) on bad days. Yet, with a simple smile or a giggle, all the frustration will soar out the window and you will bend over backwards to do anything to keep that smile on her face.
9. Your big kids are going to adore her. And because of her, they will be more compassionate, more understanding, and champions for the underdog. Your son will bring you to tears with how proud he is of her several times in the first year alone, all while never seeing anything different about her.
10. Love doesn't count chromosomes.
11. Your family will become closer than ever before. The hardship of being separated will bring a new appreciation for the privilege of each others' company.
12. She will keep you laughing. She will make you bust your buttons with pride. She will light up your day with a simple smile.

13. She will teach you more about life, about God, and about yourself than you could ever hope in a thousand years to teach her. She will make you stronger than you ever believed and kinder than you ever hoped.

14. You will be joining a group of the most amazing parents that walk the face of the Earth. Every single one different, with different points of view. We may not always agree on anything other than one thing....we love our kids....and that alone puts us all on the same side, that of our children.

15. That which you fear most will one day become the one thing in your life which had the greatest impact. The fear gives way in the face of the best thing that ever happened to you.....

Friday, March 9, 2012

I have read a whole lot of blog posts over the last several weeks about new prenatal screening tests and what those mean for the DS community. We're scared. Not necessarily of the test itself, but of how this test will impact the already dwindling numbers of new babies with a little extra being brought into this world....Personally, I am not against the test itself. But I DO have concerns that when faced with a positive result and a medical community that too quickly jumps on the "pursuit of perfection" bandwagon, more expecting parents will jump to the conclusion that their best option is to end the life that already exists. It makes me heart sick.
This month brings with it World Down Syndrome Day, the first since being acknowledged by the UN. In honor of this very special day (the day that 1 year ago I finally reached my tentative arms out to the DS community), my plan is for every post I do for the remainder of the month to be directed towards new parents. I am hoping against hope that my words and the pics of beautiful Liddy will touch a chord in those parents' hearts and allow them to see that although this journey may not be the one they imagined starting out, it is a journey well worth taking anyway.

Over the last three weeks, I have sent out a whole lot of copies of the questionnaire I created for my MGR project. As I started reading through the replies sent back to me, I was inspired anew by the stories and wisdom which filled my inbox. These words, written with love and care by other mamas, are simply too important to be filed away and hidden from the rest of the world. So...guess what. Those testimonies are going to be popping up right here over the next few weeks as well, starting tonight......

I asked these moms How has having a child with Down Syndrome changed your life? These are their replies:

Honestly, the only major adjustment I've had is going from having one child to two children. Andy is our second child and has made us a family of four. He is as charming as our older son and brings much joy to family and friends. We have become a part of the local Down syndrome community and have networked with families all over the world through Facebook and Babycenter.com.~Kathryn

Claire has opened our eyes to a whole different world we did not even know existed. We have met so many different wonderful people that we would have not met. My views of people with special needs are completely different. I feel I am a more compassionate person and will see things in a different manner. She has also brought our family closer together.~Amber

He has made both the lives of my husband and I so much better, and brighter. He has opened us up to the world around us and helped us to see the bigger picture. He has filled our home with laughter, joy and love...and quite honestly he is exactly the son I imagined before I had him~Tonya

Tonya and Camden

Our life has changed for the better. So much joy. We have learned and experienced so much over the past year, gained many new friends and are now so much more appreciative in what our typical son is capable of. Our outlook on life has changed and we are changed people, for the better. ~Shana

Shana and Gage

Wow, how has she not changed my life should be the question. Before Emily, the only things I knew about Ds were the stereotypicalH things most people know. I am not proud to say that I associated it with a flatter face, shorter stature, and an overall slowness to the person. Hearing those words, "your child has Down syndrome" scared the life out of me. I wasn't the "type" to raise a child with a disability. These were the thoughts racing through my head five minutes after having my entire world change. I then looked down at the beautiful angel in my arms and realized that she was perfect, that I was the type of person to raise this beautiful little girl, and that I would NEVER ask "why" again. Having Emily has taught us all that it really is about the journey and not the destination. Emily didn't sit up until she was almost a year old. She spent the first year of her life in and out of hospitals for one thing or another. She didn't start bearing weight on her legs until 18 months old. She took her first real steps at just shy of two. As a mom of seven others, all of whom walked well before ten months old, it was most assuredly a slower pace, but it was Emily's pace and that was all that mattered. She would get there in time and she taught me to sit back and enjoy the ride instead of thinking about the end destination.~Ange

Ange and Emily

Eugenio has changed each person that is part of my family. He has thought us so much, he changed our entire world. He introduced us to a new world that I didn’t have an idea it was out there. I have meet so many great people that if it wasn’t for him I don’t think I would of have the chance to meet them. I think the most important is things I have learned from him is: that I became a better person, to understand and believe in others, to appreciate each moment and each little thing that he and my other two kids do. And I think the most important to understand and respect everyone’s way to be. ~Adriana

Adriana and Eugenio

He brings so much joy to everyone, especially his sister. They are amazing together and have a bond I never did with my siblings. He has definitely opened our eyes to not taking things for granted, like baby milestones. He has brought us together with so many new and amazing friends in the Ds community. He makes me thankful for our health and more cautious about spreading germs to others. He has made his sister automatically accepting of kids who are different. He has made me want to be a better, healthier parent knowing that he may rely on me for certain things his whole life. He has opened our eyes to other special needs adoption situations and that we may pursue in the future. We weren't sure he would be a fit for our family, but now we can't imagine our lives without him.~Kristin

Kristin, Steve, Piper and Max

Jarrett is one of the best things to happen to our family! He makes us appreciate every step of a journey; to celebrate all accomplishments no matter how big or how small. He works so hard and has such perseverance. He makes us laugh every day--I love seeing him try to keep up with his brother. Anything Jackson does, he wants to do too--that provides such motivation to him! Every one loves him! They are drawn to his precious personality--he is such a social butterfly! He attends preschool 3 days a week and is such a hoot while he's there! He thinks of all the big boys are like Jackson--he gets in there with them and doesn't hesitate! :) His teachers love him and his therapists do too! We love him! He provides such joy and laughter to our family! His cackle is music to my ears! ~Jill

I am much less self centered, like most mothers I guess. I am totally in love with every child I meet as always, but our little ones with "a little something extra" totally make me happy. I will stalk strangers just to meet them!~Kimberly

Kimberly and Grace

I have become an advocate for my daughter and for others with DS and other disabilities. Piper is our 6th child with special needs, but this need to advocate and change the world is unique to being her mom. Our immediate family has grown closer...her siblings adore her and will do any thing to help her, or to help us help her. I have become a researcher, educating myself and questioning the experts. We have changed our eating habits - focusing on good nutrition...organic foods, etc so help maximize her health. We are starting a not-for-profit to help make a better future for Piper and others with DS.~Kristi

Kristi and Piper

She has brought joy - and perspective. We have redefined success, and I feel like we are better people for it. We are enjoying and celebrating the small things, cherishing our time together, and definitely laughing more. We are going against the grain of the ME culture we live in - and that is a good thing. :) My husband added that he is much less concerned with what people think about our kids (not trying to compete with everyone else) and we have healthier expectations of all our kids now.~Lisa

Having Owen has been a blessing in disguise. My husband and I prioritize so much more--is it worth it to have X, Y, Z in our lives? Do we really need this or that? I personally have learned to be more patient and seek out help from others, which has always been a struggle for me. I have learned a lot about time management too! I think I probably would have done or learned these things regardless of his diagnosis, but I've really had to stretch more because of him having DS.~Stephanie

She has brought so much joy and happiness into our life! My family was not so close before I had Paige – everyone fighting with everyone very stressful – But I truly think that Paige has brought us all closer, not sure if it is because she was born with DS or just something so sweet how could you go on fighting?? The first couple of months that she was born was hard to get through but now that she is 10 months old, life is just how we wanted it, a loving family of 3!!~Terra

Terra and Paige

He was not what we were expecting, we have learned a lot about Down Syndrome and also have learned to have a more positive outlook on life because of him. We cheer him on with every accomplishment he makes no matter how small. We have also learned that regardless of the fact that Rylan has Down Syndrome we would not trade him for a typical child because we believe this is the child we are supposed to have, and that we love him more than life itself.~Els

He has taught me to be more patient than I ever knew I could be, to take the time to appreciate every little thing and take nothing for granted, to never give up trying (he doesn't), and to smile even when things are tough. He has also taught me to be more understanding of those that may not be like everyone else...and to appreciate what it is that makes them different...this is something he has also taught other family members. ~Cathie

I have become a different person. A more selfless person. I am more aware of those struggling or those that are different. I have met people and befriended people I would have never known. I have conversations I would have never had. My faith in God has grown stronger. My admiration for Him deeper. I have become an advocate for Down syndrome.~Shannon

Shannon and Fiona

She has impacted our lives profusely. I was always the girl that said I could never raise a child with a disability. I was close minded and uncomfortable around people that had some type of special need, it wasn't what I would have chosen for my child. Now I am living the life. I am head over heels in love with my daughter and the extra chromosome she carries. She is perfectly made. Through her surgery & my pregnancy I developed an intense faith. I have a true deep understanding of having a relationship with Christ. I am more patient. I take nothing for granted. We work HARD for every.single.milestone & we celebrate them big! I used to assume that special needs meant no big dreams or goals, but now that I am a parent to a child with special needs I realize that I do have big goals & dreams for her, just as much as I do for my typical children. She has utterly changed every aspect of my life for the better and I am thankful because I am a much more caring, compassionate, understanding, and whole person because of her.~Annie

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Down Syndrome Creed

My face may be different but my feelings the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach and to love as God in the heavens looks down from above. To Him I'm no different, His love knows no bounds. It's those here among you in cities and towns that judge me by standards that man has imparted, but this family I've chosen will help me get started. For I'm one of the children so special and few that came here to learn the same lesson as you. That love is acceptance, it must come from the heart; we all have the same purpose, though not the same start. The Lord gave me life to live and embrace, and I'll do it as you do but at my own pace.